About Me
In 2003 a mystery ailment hit like a Mack truck rendering it impossible for me to work. I spent years being referred from one doctor and test to the next. Test results indicated all kinds of health maladies, yet I received no comprehensive diagnosis nor treatment. And I had comprehensive medical insurance through CIGNA. So I assembled my medical records, studied and self diagnosed. I’ve been disabled for over 5 years now with severe degeneration of the spine caused by an untreated bacterial infection, and I need gastrointestinal surgery. Not being diagnosed cost me my job, my health and all my wealth. I’m facing foreclosure and bankruptcy in very bad health. Try finding a lawyer who will sue on your behalf once you’ve lost everything. This blog is a Hail Mary pass to anyone willing to help me. It chronicles my dogged pursuit for competent health care. We’ll never reform health care without shifting the focus from simply making money to truly providing a service. I’d like to help by publicizing my story as representative of the tens of thousands of patients in the U.S. with chronic illness because they slipped through the health care cracks.
I have all of the same symptoms as you. ARe you going ahead with the surgery ? Have you been treating your HHV6 ? I also have HHV6 – detected by PCR. And I also constantly go through the “What caused this ?” scenario.
Thank you for your e-mail. I often wonder if anyone reads my blog… Your comment helps me believe that sharing my story may do some good not only for myself but for others.
To answer your question…I wasted a lot of time and money while I still had medical insurance with doctors who were either incompetent or just stopped caring about their patients. I was caught up in a maddening scenario of being really ill, being told I wasn’t that ill and refusing to believe that none of the dozens of doctors I saw was going to help me get better.
I didn’t figure out what I had until after I ran out of money and insurance and stopped seeing doctors. (None of my doctors diagnosed nor treated me despite the wealth of positive test results.) It took me two years more to find a doctor who knew anything about actinomycosis (an invasive submucosal bacterial infection), so that I could get a prescription for penicillin. Usually the disease is treated in hospital with intravenous penicillin for three weeks and accompanying surgery before the patient is prescribed oral penicillin for the next 6-12 months. Not having money nor insurance now…oral penicillin will have to do.
I have systemic actinomycosis infecting my head, thorax and abdomen. The disease is slowly progressive and developed to its severe state over my lifetime. It explains the many unrelenting earaches I had as a child. Infection spreads to the skin, vertebral bodies, brain, liver, kidneys, ureters and pelvic organs.
I need surgery to address infection in my cecum and appendix. My doctors didn’t know what to make of the CT scan showing a cecal abdominal mass causing partial intestinal obstruction. They chalked up my headache, back pain and persistent lower abdominal pain to gas and did nothing. My big worry is that such nodules may stimulate malignant cancerous growth. Its known that most actinomycotic abdominal lesions occur in the ileocecal region.
I am still looking for a competent gastrointestinal surgeon who knows about actinomycosis as well as Hirschsprung’s disease to address further abdominal irregularities in my sigmoid colon. It scares me a great deal to know that most physicians, even surgeons, don’t have a clue about either disease. The most knowledgable are pediatric surgeons because my problems are typically diagnosed and treated in children.
Last fall, I applied for and was awarded Social Security Disability within three months. (No non-SSA doctors helped me with the claim.) That makes me eligible for Medicare coverage this September. (Virginia does not offer Medicaid coverage to adults — only children and women during their pregnancy.) I am hoping to have identified a competent surgeon and to have shored up stable living arrangements by then. There’s nothing like being homeless with a colestomy bag. I’m in the process of having my home foreclosed upon.
I have been taking L-lysine for my HHV-6 (viral demyelinating infection) and EBV. The doctors I saw confused HHV-6 with HHV-1, which causes cold sores and felt no treatment was necessary. I have no idea if the L-lysine is effective specifically against the HHV-6 infection. I can tell you that at first, I couldn’t even tolerate the lysine — it made me so sick — and now it makes me feel a little better when I take it.
I found through http://www.hhv-6foundation.org that antiviral treatments (Ampligen, isoprinosine, beta interferon, valacyclvir, valganciclovir) have been found effective in treating HHV-6 in small studies. I also found that studies indicated a link between persistent viral infection with HHV-6 and chronic fatigue syndrome. It seems viral infections reduce blood fatty acid levels which explains many CFS symptoms. I wonder if there is a link between HHV-6 infection and Hirschsprung’s disease.
I just completed a new set of blood tests in late February and will review test results with a new physician March 25th. I’m anxious about whether I’ll be able to afford any treatments or whether the meds I need will be available through charitable pharmaceutical programs. My new physician suggested I look into Cancidas, a fairly new IV antifungal that has been approved for use in infants over three months old to treat Candida infections. The drug is not available through the manufacturer’s discount drug program for the low income uninsured. Although providers can get a supply of the drug restocked once they provide proof that a patient was successfully treated and proof of receipts for the drug purchases made throughout the patient’s treatment (a $6,000 value).
I was planning on blogging about my latest experiences once I had a better handle on test results and prescribed treatments.
Lastly, I’d like to recommend some articles on http://www.immed.org. Garth Nicolson at The Institute of Molecular Medicine in Huntington Beach, California found that the toxic by-products of chronic bacterial and viral infection cause neurological degenerative diseases (MS, ALS) and behavior disorders (ASD) such as autism, attention deficit and asperger syndrome. Other chronic illnesses that exhibited neurological manifestations due to chronic bacterial co-infection were CFS/ME, FMS, Lyme disease and Gulf War illness.
Just one question…. have you ever taken a Fluoroquinolone Antibiotic, Cipro (Ciprofloxacin), Levaquin (Levofloxacin), Avelox (Moxifloxacin)or others of this class?? Many such as Tequin and possibly Floxin have been removed from the market.
I am asking for a reason. Thanks
Shelley, I took Cipro a few years ago, but since found that my health problems are more involved than can be cured with just an antibiotic. I found that antibiotics kill both good and bad bacteria indiscriminately, which opens the flood gates for yeast growth, particularly Candida, and Clostridia colonization (both of which I now have). Knowledgeable doctors tell patients to take inulin and probiotics to counteract the effect of the antibiotics. Unfortunately, doctors typically don’t do sensitivity tests to determine which pathogen is causing problems and which probiotic is best to defend against that particular pathogen. Just as broad spectrum antibiotics don’t have any effect on certain bacteria, “broad spectrum” probiotics don’t defend against certain fungus. And neither have any impact on viral infections, which I found are commonly present when there is fungal and bacterial infestation.
I’m not going to be much help to you if you are looking for evidence that taking the named antibiotics had adverse health impact. I will tell you that I learned that the only way to effectively attack disease is an all out simultaneous effort. I found too many doctors try to address only one thing at a time. But if you go after, say, bacteria, fungus grows. And if you attack the fungus, the bacteria beefs up. And it’s impossible to get rid of inflammation without addressing the cause.
I will definitely be taking a look at your blog….
Well, herein lies the issue with Fluoroquinolones…. they do not destroy bacteria per se, they “work” by destroying bacterial DNA. They damage our own healthy DNA….. causing a multitude of “mysterious symptoms” and health issues including joint, cartilage, tissue damage, damage to vital organs, depletion of minerals from our bones, damage to every system of the body. I’ve had the misfortune of watching several people die within days of having Levaquin (Levofloxacin) running through their veins. I have to wonder if the Cipro you had taken didn’t have something to do w/ your health issues. My cousin had been misdiagnosed and given Fluoroquinolones on several occassions leading to even worse infections until finally her kidneys could not handle the toxic overload. I hear these stories of being poisoned by Fluoroquinolones such as Cipro (and the others) on a daily basis… I had been in excellent health my entire life until I was also poisoned by this vile class of antibiotic…. 20 pills total 2003, Avelox and Levaquin, for a sinus infection…. completely destroyed my life. The worst part, taking a year to put the pieces of the puzzle together because the medical community, the drug manufacturers, even the FDA are outright lying about the toxicity of this particular class of drug. How much Cipro did you take?? Please take a look at FQResearch.org or FQVictims.org and Levaquin YouTubes…..
Thank you for visiting my blog and commenting on it. I will be tuning in to your blog. You are such an articulate writer. Your story saddens me. I actually have a lawyer-friend who might be interested in looking into your case. I will send him this link.